Patient involvement in the development of the Danish surgical breast cancer patient pathway

Abstract

Although patient involvement is on the political agenda, the influence on clinical practice is poorly described. The aim of this study was to explore and evaluate the participatory process of involving patients and relatives in development of a surgical breast cancer patient pathway. The overall design was insider action research and included two Danish surgical breast cancer clinics. In dialogue meetings patients, relatives, and healthcare professionals (HCPs) discussed suggestions for improving the pathway. Patients and relatives were satisfied with the pathway organisation in general. However, suggestions related to information, communication, and choice of treatment were presented. In response to this, a patient decision aid was developed, tested, and implemented, and HCPs increased focus on male relatives, and made minor changes to the pathway. Participants were satisfied with the participatory process, however, recommendations for future dialogue meetings included shortening the follow-up period, using a skilled facilitator, reminding HCPs being open-minded, and emphasizing for patients and relatives that participation may require a surplus of mental resources. Overall, recommendations on patient involvement obtained from this project could, due to their general relevance, be implemented in clinical settings other than breast cancer. Furthermore, action research proved a suitable design for research on patient involvement.

Keywords

Patient involvement action research health services continuity of patient care questionnaire breast neoplasms

Get full access to this article

View all access options for this article.

References

Andersen

(1990). The reflecting team: Dialogues and dialogues about the dialogues. Borgmann.

Armstrong

Herbert

Aveling

E. L.

Dixon-Woods

Martin

(2013). Optimizing patient involvement in quality improvement. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 16, e36–e47. https://doi.org/10.1111/hex.12039; 10.1111/hex.12039

Bate

Robert

(2006). Experience-based design: From redesigning the system around the patient to co-designing services with the patient. Quality & Safety in Health Care, 15, 307–310. https://doi.org/10.1136/qshc.2005.016527

Boaz

Robert

Locock

Sturmey

Gager

Vougioukalou

, Ziebland, S. & Fielden

(2016). What patients do and their impact on implementation. Journal of Health Organization and Management, 30, 258–278. https://doi.org/10.1108/JHOM-02-2015-0027

Bombard

Baker

G. R.

Orlando

Fancott

Bhatia

Casalino

, Onate, K., Denis, J.-L. & Pomey

M.-P.

(2018). Engaging patients to improve quality of care: A systematic review. Implementation Science, 13, Article 98. https://doi.org/10.1186/s13012-018-0784-z

Coghlan

Brannick

(2010). Doing action research in your own organization (3rd ed.). SAGE.

Coleman

Forman

Bryant

Butler

Rachet

, Maringe

Nur, U., Tracey, E., Coory, M., Hatcher, J., McGahan, C. E., Turner, D., Marrett, L., Gjerstorff, M. L., Johannesen, T. B., Adolfsson, J., Lambe, M., Lawrence, G., Meechan, D., … the ICBP Module 1 Working Group. (2011). Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995–2007 (the international cancer benchmarking partnership): An analysis of population-based cancer registry data. The Lancet, 377(9760), 127–138. https://doi.org/10.1016/S0140-6736(10)62231-3

Coulter

Locock

Ziebland

Calabrese

(2014). Collecting data on patient experience is not enough: They must be used to improve care. BMJ (Clinical Research Ed.), 348, g2225. https://doi.org/10.1136/bmj.g2225

Coulter

(2011). Selecting treatments. Engaging patients in healthcare (1st ed., pp. 58–82). Open University Press.

10.

Cribb

(2011). Involvement, shared decision- making and medicines. King’s College London.

11.

Danish Breast Cancer Cooperative Group. (2018). Guidelines. www.dbcg.dk

12.

Danish Health Authority. (2012). Pathway programme for rehabilitation and palliation in cancer care no. 1).

13.

Danish Health Authority. (2015). Follow-up programme for breast cancer no. 1).

14.

Danish Health Authority. (2018). Breast cancer patient pathway. For healthcare professionals.

15.

Danish Health Data Authority. (2017). New cancer cases in Denmark. Cancer registry 2016. www.sundhedsdatastyrelsen

16.

Danish National Committee on Health Research Ethics. (2017). Act on research ethics review of health research projects. http://www.nvk.dk/english/act-on-research

17.

Danish Regions. (2017). White paper. Patient responsible doctor (white paper no. 1).

18.

Emerson

R. M.

Fretz

R. I.

Shaw

L. L.

(1995). Writing ethnographic fieldnotes. University of Chicago Press.

19.

European Commission. (2012). Eurobarometer qualitative study patient involvement aggregate report.

20.

General Assembly of the World Medical Association. (2017). WMA declaration of Helsinki. Ethical principles for medical research involving human subjects. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/

21.

Greenwood

D. J.

Levin

(2007a). The friendly outsider: From AR to research strategy to the skills needed to become an action researcher. In D. J. Greenwood & M. Levin (Eds.), Introduction to action research. Social research for social change (2nd ed., pp. 115–130). Sage Publications.

22.

Greenwood

D. J.

Levin

(2007b). Introduction to action research: Social research for social change (2nd ed.). Sage Publications.

23.

Gustavsen

(1992). Dialogue and development: Theory of communication, action research and the restructuring of working life. Swedish Center for Working Life.

24.

Gustavsson

S. M.

Andersson

(2017). Patient involvement 2.0: Experience-based co-design supported by action research. Action Research, 17(4), 469–491. https://doi.org/10.1177/1476750317723965

25.

Heap

(2005). Gruppemetode inden for social- og sundhedsområdet. (3. udgave ed.). Hans Reitzel.

26.

Herrin

Harris

K. G.

Kenward

Hines

Joshi

M. S.

Frosch

D. L.

(2016). Patient and family engagement: A survey of US hospital practices. BMJ Quality & Safety, 25, 182–189. https://doi.org/10.1136/bmjqs-2015-004006

27.

Holm-Petersen

Wadmann

Andersen

N. B. V.

(2015). Styringsreview på hospitalsområdet – forslag til procedureog regelforenkling No. 1). KORA.

28.

Hubbard

Kidd

Donaghy

McDonald

Kearney

(2007). A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Education and Counseling, 65, 21–33. https://doi.org/10.1016/j.pec.2006.02.009

29.

Malterud

(2012). Systematic text condensation: A strategy for qualitative analysis. Scandinavian Journal of Public Health, 40, 795–805. https://doi.org/10.1177/1403494812465030

30.

Nielsen

L. D.

(2006). The methods and implications of action research. In Nielsen

K. A.

Svensson

(Eds.), Action research and interactive research: Beyond practice and theory (1st ed., pp. 95–101). Shaker Publishing.

31.

Ocloo

Matthews

(2016). From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety, 25, 626–632. https://doi.org/10.1136/bmjqs-2015-004839

32.

Probst

H. B.

Hussain

Z. B.

Andersen

(2012). Cancer patient pathways in Denmark as a joint effort between bureaucrats, health professionals and politicians – A national Danish project. https://doi.org/ez.statsbiblioteket.dk:12048/10.1016/j.healthpol.2011.11.001

33.

Robert

Cornwell

Locock

Purushotham

Sturmey

Gager

(2015). Patients and staff as co-designers of healthcare services. BMJ (Clinical Research ed.), 350, g7714. https://doi.org/10.1136/bmj.g7714

34.

Rowe

Frewer

(2005). A typology of public engagement mechanisms. Science, Technology & Human Values, 30, 251–290.

35.

Sandager

Freil

Knudsen

J. L.

(2016). Please tick the appropriate box: Perspectives on patient reported experience. Patient Experience Journal, 3, 63–79.

36.

Sarrami-Foroushani

Travaglia

Debono

Braithwaite

(2014). Implementing strategies in consumer and community engagement in health care: Results of a large-scale, scoping meta-review. BMC Health Services Research, 14, 1–16. https://doi.org/10.1186/1472-6963-14-402

37.

Snyder

Engström

(2016). The antecedents, forms and consequences of patient involvement: A narrative review of the literature. International Journal of Nursing Studies, 53, 351–378, 28p.

38.

The Health Foundation. (2013). Involving patients in improving safety.

39.

Unit for Evaluation and User Surveys. (2015). National patient satisfaction survey 2014.

40.

Unit for Evaluation and User Surveys. (2017). National patient satisfaction survey, 2016.

41.

van Draanen

Jeyaratnam

O'Campo

Hwang

Harriott

Koo

Stergiopoulos

(2013). Meaningful inclusion of consumers in research and service delivery. Psychiatric Rehabilitation Journal, 36, 180–186. https://doi.org/10.1037/prj0000014; 10.1037/prj0000014

42.

Vet

H. C. W. d.

(2011). Measurement in medicine: A practical guide. Cambridge University Press.

43.

Zoylner

I. A.

Lomborg

Christiansen

P. M.

Kirkegaard

(2019). Surgical breast cancer patient pathway: Experiences of patients and relatives and their unmet needs. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 22, 262–272.

Patient involvement in the development of the Danish surgical breast cancer patient pathway – An action research project

Abstract

Keywords

Get full access to this article

References